Graham Grindlay was 32 years old, in his third year working toward a doctorate in computers and music at Columbia University, when he fell in his apartment and died during or just after an epileptic seizure. His parents, Jonathan and Sandra, believe it’s not just SUDEP that doctors are loathe to discuss with patients, but any possibility of death from epilepsy, including accidents like their son’s.

“The flaw in the system that we experienced was that we had always been told how benign epilepsy was,” says Sandra Grindlay. “Doctors used that word repeatedly. No one said be careful and think about your living situation. What we heard over and over was that seizures look terrible but are benign, that there was nothing to worry about.”

Graham was 12 and living in Lincoln when he was diagnosed with epilepsy at Boston Children’s Hospital. His doctors were at the Harvard University Health Services, since his parents both worked at Harvard. He saw a neurologist every six months and his seizures, once or twice a year, had responded to medication.

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Grindlay died on Jan. 10, 2011, after a fall in his New York apartment in which he hit his neck and stopped breathing. He was alone because his wife was at her job at Connecticut College and they lived apart during the work week.

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“It was a fluke kind of thing, perhaps preventable,” says his mother. “There’s a need for more education and communication to patients about safety and the real possibility of accidental death. I often think of what might have been done to provide safeguards if only we had been prompted to think about it.”

After her son’s death, she called his doctor. “He told us it was his carefully thought-out decision not to discuss these dangers with his patients,” Sandra Grindlay says. “I was shocked to hear this from a prominent epilepsy specialist at Columbia, one of the leading epilepsy research institutions in the country.”

She understands that health professionals don’t want to unnecessarily alarm patients. “But doctors shouldn’t gloss over the dangers of epilepsy or make it sound so benign, so harmless,” she says, adding that if patients and relatives were better informed, they’d be better equipped to think about protective measures.

Three year later, she says, she and her husband are still “tortured by these thoughts of, ‘If only I’d known this, if only I’d done that.’ ”